CONFERENCES

Rare Bone Disease Workshop

The Bone Research Society (BRS) is one of the largest national scientific societies in Europe dedicated to clinical and basic research into mineralised tissues, and is the oldest such society in the world. Meetings are held annually, attracting a wide audience from throughout the UK and beyond. The presentations are traditionally balanced between clinical and…

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ADVOCACY

OIFE at ECRD

On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…

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ADVOCACY

OIFE AT EURORDIS AGM

On May 13th OIFE president Ingunn represented OIFE at the Annual General Meeting of EURORDIS – European Rare Diseases Organisation on Zoom, which was scheduled to take place in Stockholm followed by the ECRD-conference. We approved reports and voted for future plans, which includes many important initiatives, that will affect the lives and situations of…

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ADVOCACY

29th EURORDIS Round Table of Companies Workshop

On February 19th 2020 OIFE was again represented at an EURORDIS event in Brussels. Vice President Dace Liepina participated at the 29th EURORDIS Round Table of Companies Workshop “How to teach an old medicine new tricks – The importance of repurposing medicines for patients”. The meeting is primarily for pharma companies, but also open for…

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CONFERENCES

Report from Quality of Life 4 OI

OI is more than Fractures, Surgeries and Pain! As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019. This…

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CONFERENCES

Marie’s Youth Corner

Impressions from the “QualityofLife4OI” Conference I attended the QualityofLife4OI conference in Amsterdam last month. I wasn’t sure if it was a good idea to go, because I had to move apartment two days after the conference. Luckily I decided to go and it was such an amazing trip and I managed to pack my apartment…

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CONFERENCES

OIFE in Barcelona

Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…

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CONFERENCES

The Voice of People with OI

Do you want help us establish the voice of people with OI? OI Community Sounding Board The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is…

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CONFERENCES

Join Quality of Life 4 OI!

Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam! The Conference organized by Foundation Care4BrittleBones together with OIFE, OIF, ERN-BOND and BBDC will provide a platform to engage on clinical practice and research aimed at increasing quality of life for people with OI. The conference discusses topics like…

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